My Latest Article on The Mighty

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I’ve written many pieces about the challenges of being married and having an illness like schizophrenia. Here is one of my latest pieces on The Mighty. Those of you who have followed my blog for a while will likely find this similar to things I have written before.

Free Gift of Self-Care December 1st – December 25th

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December Giving To Anyone with a Chronic or Mental Illness

 

If you are not familiar with an advent calendar, it is a calendar that starts on December 1st and ends on December 25th (Christmas). When I was growing up, we had a felt advent calendar in our living room and the first one to wake up in the morning, removed, the little piece of felt and a picture (like a star, or poinsettia and the day’s date became visible). When my niece and nephew were little, I used to buy them the same type of calendar at Trader Joe’s, and each day they could open the tiny door on the box, and there was a piece of chocolate covering that day’s date. They would eat one piece of chocolate every morning from the 1st to the 25th of December.

Because December and the holidays can be tough on people, especially people with a physical or mental illness, I try to get my husband and me through the season in the best state of mind possible, and one way I do that is to create a twist on the advent calendar every year.

Last year I took twenty-five clothespins and clipped them on a string and hung it across a wall in the living room. I clipped a piece of paper to each pin. On the front of the paper was a number (from 1 to 25) and when my husband opened each piece of paper during December, he found a random act of kindness that he had to complete that day. One day, his act was to open the door for a stranger. Another day it was saying hi to five people he passed on the street. Another day it was leaving a dollar twenty-five in quarters in the laundry room so someone could do a free load of washing.

This year, I am going to take twenty-five envelopes and twenty-five recipe cards. I am going to write an inspirational quote on each of the twenty-five cards, put them in an envelope and number each envelope from 1 to 25. The same idea can be a self-care routine for someone with a chronic physical or mental illness, but instead of inspirational quotes, there can be a five-minute action (some may take more than five minutes) that the person has to complete that day.

Some suggestions for a self-care calendar are: eat one of your favorite foods today, draw a picture, or burn your favorite candle. For someone else it might be, make yourself a cup of tea and stare out the window while you sip it, take a nap, read at least two articles from your favorite magazine, or start a new book. Someone else might like things like, call your best friend, take a social media break, watch an episode of your favorite show, or one of your favorite movies.

There are endless ideas you can use for this gift to your friend or loved one, and the better you know them, the easier it will be for you to come up with ideas for little (or big) things for them to do. If you want to make it even more elaborate, on some days, you might want to include a small gift with the self-care suggestion — for instance, a candle, a book by their favorite author, the latest copy of their favorite magazine. I wouldn’t get carried away though, the beauty of creating this gift is it is in the thought and time spent putting it together. We all know that it is the thought that counts and this gift are thoughts that count (Calendar! Countdown to Christmas!) Okay, I’m better at making holidays special than making puns!

 

One Simple Thing and Our Lives Just Got Easier

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Twelve years ago, when my husband and I moved to San Diego, we bought a California king bed for our new apartment. Six months ago, my father-in-law sold his condominium and offered us his almost new king-sized bed. When my husband measured the two beds to make sure that the new one would fit in our room, he noticed that something was wrong. They were different sizes. He guessed that his fathers was a standard king and that is why it was different than ours, but his father’s bed was longer than ours. When he investigated further he discovered, our bed was a standard king, and his fathers was a California king.

For twelve years we had struggled to make the bed. We never found a set of sheets that fit correctly and after a year or so they would end up ripping at the corners. It was a constant battle to keep the fitted edges tucked in, and almost every night the sheet would pop off on mine or my husband’s side (usually mine because I toss and turn more in my sleep) — twelve years of battles.

Last week we received a Target gift card and went to the store and bought a set of red stripped flannel sheets in a standard king size. We washed them, then made the bed, and they fit perfectly. There was no pulling, tugging and stretching the corners to get the fitted edges over the side. Making the bed has become a breeze, and we no longer have to lift the mattress and stretch the elastic over the corner each morning when we wake up. We received another Target gift card a couple of days ago and went and bought two more sets of standard king-sized sheets and we boxed up all of our old linens to donate to Goodwill (I doubt they take bedding, but we will try).

I thought the story of our bed was a perfect metaphor for so many things in life that destroy our well being, damage our relationships and chip away at our self-esteem. Have you ever thought something about a person and struggled to make them fit your idea? Have you ever thought something was good, or right and wrestled to make yourself fit the mold? Have you ever wanted to be two to three sizes smaller and dieted and worked out, but never fit into the clothes you were dreaming about?

Twelve years of struggling to make the bed combined with dozens of torn sheets – throw out the assumptions and expectations and measure the darn bed! In other words, toss the assumptions, check the facts, and if they don’t match up, go to Target and remedy the situation.

Thanksgiving Post with a Twist

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I keep a gratitude list most days of the week, and there is nothing on any of my lists that you would find remarkable or surprising. As someone who has chronic paranoid schizophrenia not being psychotic and having a loving partner are reasons for intense and radical gratitude every day, along with the ability to appreciate and participate in what most people would find mundane.

So, this year my Thanksgiving post is not about me, but about you. It is not about giving thanks, but holding space for hope. As someone who frequently feels voiceless and on the outside of every community I try to fit in and belong to, I hope you find acceptance because acceptance can be a deep and sacred desire. I hope it for you.

I hope that no matter how violent, infuriating, discouraging, and stress-inducing the news is that you can find time to turn it off and enjoy reading, writing, watching a movie, having coffee or a conversation with a friend. I hope you make time for yourself and the pleasures in life despite the 24/7 cycle of bad news.

I hope that you have someone, near or far, that you can be your authentic self with. Someone who can see you in trying times, the best times, the worst times, your highs, your lows and everything in between.

I hope that this year you will make a new friend, learn a new skill, get a new job, publish an essay, sell a photograph or anything else that would fill your heart with joy.

Most of all, I hope you have love. I hope that you give it and receive it. I hope that you bask in its power and wake to its glory. I hope that it surrounds you day and night and that you never, not once, forget that it exists in the universe and is free and open to us all.

When Work Doesn’t Work Out

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When your mental illness shows up and knocks you off of your new found high. The pieces are scattered all over the ground, and you are on your knees with your arms outstretched reaching for the broken fragments of your life knowing you have to rebuild for the umpteenth time and wondering where you will find the strength or desire.

Taking my Schizophrenia Back to Work

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I started my new job as an usher for live performances on Halloween. I have seen the first half of the musical Wicked eight times since then. I can not get the songs out of my head. At my polling place this morning as I was waiting in line to vote, I was singing some of the songs to my husband and people around us started to laugh. I had to tell them what my job is and that the only music I have listened to in the past two weeks is from the production. Several of the people had seen the show and others want to.

Ushering is my second job outside of writing that I have held in eight years. I worked for a day at an Amazon Warehouse, but that turned out not to be a place I could keep my symptoms at a minimum. This new job is stressful only in that I have to learn two theater’s seating charts, and one of the theaters seats almost three thousand people.

I know that sounds easy, but it isn’t easy at first, it is complicated. Each shift gets better because for instance now I am confident that the right side of the house is all even seats and the left side of the house are all odd seats. It seems simple, doesn’t it? I don’t find it simple, at least not yet. There are eight different sections to the theater, and each section has its own set of numbering. UGH! After a month, I am sure it will be second nature. It is just this first month that has me stress sweating every time I go to work because I want to do everything right and fear to make a big mistake.

Of course, I love dealing with the public. Customer service is something I have always enjoyed and the more confident I feel about the location of seats, the better customer service I can provide. I like to greet people, and chit-chat with them. I know that sounds strange because only a few weeks ago, I was writing about isolating socially. Well, for years, I did isolate socially, but now I am in the middle of the crowd smiling, laughing and talking.

I have worked hard these past seven days. I even worked three days of double shifts. I didn’t realize what I was signing up for at first, so November is more difficult than any month going forward. It is hard, and I probably won’t get a lot of writing done, but by the end of November, I should be completely familiar with the larger of the two theaters (the only one I have worked in), and that should make the job so much easier and fun. Because let’s face it, working for a theater is a fun job!

Even though I have been writing for the past few years, that is not at all the same as having a job with supervisors, co-workers, customers, etc. I answer to editors when I have an article or essay due, but for me, that isn’t every day. Also, with writing everything is online by e-mail. At my new job, I have to wear a uniform (instead of pajamas), put on make-up, take a shower, talk to people, clock in, do what is expected of me, smile, be pleasant, take direction, work as a part of a team, handle situations as they arise. And learn new information every day and adjust to that information.

There is one other huge difference between working at home and working outside of the home, my symptoms (except anxiety) are less. Of course, my anxiety is high because I am new and I am a perfectionist when it comes to jobs and school, but beyond anxiety, my symptoms of schizophrenia are less.

It turns out challenging myself and trying to reverse the damage this illness causes to the brain is a good strategy. Lack of motivation? Find an environment where you are accountable and expected to accomplish things. Isolating socially? Force yourself to be in the midst of thousands of people where you are required to laugh, talk and engage.

I know that not everyone with schizophrenia could handle a job with so much customer contact, just like I can’t do equations like John Nash, or practice law and be a professor like Elyn Saks. We are not all capable of the same things even though we have the same disease. I will say that I wish I could start a program to get all people with schizophrenia working. The jobs would be different for everyone, but I believe the benefits would be the same: an increase in self-esteem, an increase in independence, and possibly the reversal of some of the symptoms of an illness that can take so much from you.

I did cry at work once this past week because I felt overwhelmed by not being able to answer everyone’s questions and being slow to figure out where people’s seats were, but it was only once and only a little (no tears rolled down my cheeks, they stayed in my eyes).

Despite the crying, the gains from this past week are huge. After a few more weeks, I think I am going to love my job, and I will most likely be stronger, more confident, more capable, more resilient, more productive, more cultured (from seeing so many shows), healthier and happier.

Whoever said an honest day’s work is good for the soul was on to something, possibly something significant regarding schizophrenia. I have needed time to heal, rest, and be in a stress-free environment, but now, working seems like medicine the doctors forgot to prescribe me.

Who has the Authority to Write About Mental Illness?

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I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.

I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine.  Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.

It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.

There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.

All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).

I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.

A Terrified Warrior? You Bet

Well, I am doing it, and it feels great. I am going back to work. I’m not returning to my life as a social worker, or as a marketing coordinator or any of the other more professional jobs, I have had throughout my life. I can’t handle much stress or office politics, etc. In other words, my illness has progressed to a point where a nine to five job is impossible.

I don’t think everything is impossible, though. I accepted a part-time, service industry job that pays just above our minimum wage, but I am happy. I am happy because I believe it will force me to address some of my most persistent symptoms like lack of motivation, social isolation, and anxiety.

Am I scared that I will fail? Yes, but I am also excited to be entering the world again. I am also thrilled that I will have some money to back a few projects that I really want to start. I have been paying for some marketing for my guided journal/workbook that I wrote to help people gain self-confidence, spark creativity, and increase coping skills. (It is available here if you are interested).

I am also working on a writing project/workbook with one friend and a magazine for middle-aged women with another friend. I like to joke that my first three paychecks are already spent.

From all the stuff I am trying to put together, you can probably tell that I am trying hard to get back on my feet, and make a decent living as well as create, contribute, find meaning, network, socialize, and do the most I am capable of (which I’m not sure of right now). I know I can’t work a nine to five job like before, but can I work a part-time job and run an internet magazine? I don’t know, but I am going to try.

How do I feel as I embark on this new journey? Terrified, exhilarated, alive, hopeful, and everything in between. Against all the odds, I am trying to rewire my brain and beat some of the symptoms of schizophrenia and anxiety (along with medication, and all the other treatments I receive/participate in).

People often tell me I am brave for telling my story. I have never felt brave for writing about my life, but right now, I feel strong and determined, and I know I have a spirit that doesn’t give up easily. For the first time in my life, I feel like a fighter, and it feels good.

Please send all the warrior vibes you can muster, my first shift is in a few days, and I’m going to need all the tricks, tools, and arrows I can carry.

Can Anything Good Come From Chronic Illness? Yes, for Some, Perspective

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I received an updated diagnosis from my psychiatrist. My current diagnosis is Chronic Paranoid Schizophrenia and Generalized Anxiety Disorder. I also have diverticulitis and have had to change my diet over the last two years to avoid surgery. I am going through perimenopause and have hot flashes and disturbed sleep. Lastly, I have masses that keep forming in my breasts that require testing, and for one year, I thought I had breast cancer (each time I have a new mass that is a possibility). This list doesn’t even cover the side effects of antipsychotic medication which are high cholesterol, high blood pressure, high blood sugar, and possible liver damage to name a few.

When I read that paragraph and think of all I do to try to live a healthy life, health for me is a full-time job. How much I sleep, and when and what I eat, how regularly I use the bathroom. Then there is making sure I exercise, making regular doctor appointments, having my blood checked regularly, getting mammograms every six months (or sooner if a mass grows), taking my medications twice a day, learning mindfulness exercises, and writing in guided journals that address happiness, gratitude, spirituality, health, etc. I am sure I am leaving out many details of care here.

I don’t believe that everyone can make all the changes and do all the things I do to remain healthy, and I don’t believe everyone, even if they did all these things, would be healthy (I’m not 100% healthy, some of my numbers are borderline). I’m not blaming people who have worse outcomes than me, for their level of illness – not at all. I think people can do everything right and still end up with psychosis, diabetes, cancer, surgery from diverticulitis, high blood pressure, high cholesterol, and many other illnesses. No one is immune from illness or poor health even though so many people would like to believe that it is all in their control because it makes them feel safe.

All I am trying to show by writing down what I deal with is that it isn’t easy to manage schizophrenia, or generalized anxiety or any health issue. Having to watch everything you eat, and having to eat at certain times, trying to get exercise most days, all of that stuff is hard. I wouldn’t be surprised if many people, especially those experiencing so many of the symptoms of mental illness (like depression, lack of motivation, etc.), are incapable of doing all or even half of the things necessary.

There is something else, though. In my latest note from my psychiatrist, he said, “Rebecca has wonderful skills and a positive attitude.” I almost cried when I read that. And I know it is true because despite how hard it is to try to stay well, I am so happy that I get this chance. I am so thankful, grateful, and in awe that I am alive.

On bad days, I feel a little sorry for myself, but most days, most days, I am full of gratitude to see the moon, the stars, feel the breeze and to know what it is like to be loved, and that is just the beginning of my thankfulness. I am thankful that I have food on the table, that I know how to read and write, and that I can come up with ideas to share with people. I could go on for pages, and pages and days and days about the things and people I am grateful to have in my life.

Is chronic schizophrenia hard to live with? Yes, all illness is hard to live with, but is my life worth living, and something I want to continue until I am old and gray (well, I am already almost all gray)? Yes. I want to see thirty more summers, thirty more winters, thirty more falls, and spring, yes, spring!

It’s hard. It’s tough. It’s demanding. It is difficult. But it is beautiful beyond measure and I wouldn’t change my life with anyone because no one is immune from hardship. It is my life, and I believe I only get one, so I will gladly live it, illness and all.

To Older Siblings Everywhere

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Do you ever think about your childhood and what your life was like then? I am decades away from living in the pink house, across the street from an elementary school, where I spent seven of my childhood years (from age 3 to 10).

I think about that time, with a chicken coop out back full of hens and a rooster or two; the garden that provided us with almost all of our vegetables and enough cucumbers, green beans, cauliflower, and carrots for many dinners and pickling. There were the apple trees, plum tree, and apricot trees, and a patch of strawberries and rhubarb. I’ll never forget picking tomatoes out of the garden and biting into them as the juice made a path across my dirt covered face.

It isn’t the fresh food I remember most, though or the smell of lilacs that wafted through the yard in spring. What I remember most is life with my three older brothers. I remember the times I was allowed to play with them or tag along with them, and the times I was told, no and was left behind.

Today, my oldest brother, Joel, turns sixty and it is his birthday that has me wandering back to the house where we all lived together under one roof. A house where the walls and floors and paint and furniture held our laughter, our secrets, our dreams, and our tears. At times blood tied us together, and at times life, anger and choices tore us apart.

My brother Joel had a pet mouse, a pet rat, pet snakes, played baseball as a catcher, and kept more than a dozen Reese’s Peanut Butter Cups in the freezer and instructed his younger siblings not to touch that chocolate.

I looked up to my oldest brother, and I listened to him. Listening to Joel was a problem, though because he liked to tell stories. Stories weren’t for lying, although he occasionally received a spanking for that, his stories were made up to entertain himself and anyone else who would listen. I was always a willing audience.

Joel once sent me to school with a bottle of mouthwash (I didn’t know what it was) and told me to drink it for superpowers like running faster or jump roping longer. He told me it was “White Lightning,” a magic potion. You can imagine how well my bottle of white lightning went over with my teachers in elementary school.

At school for show-and-tell, we were instructed to bring things from home that started with the letter, B. Joel went through our whole house and collected everything from baseballs, books, batteries, brushes, etc. and sent me to school with bags full of things that started with a B. I brought at least ten times the number of items of any other kid.

Another time for show-and-tell, Joel sent me to school with a record by Shel Silverstein. He wanted me to share the song, “Sarah, Cynthia, Silvia Stout.” It is a song about a girl who will not take the garbage out. The song is very funny, and my class loved it and wanted to hear the other songs on the record. Well, some of the other songs, contain adult language and themes and once again, I upset the elementary school teachers.

Having older siblings almost ensures that you will know things teachers don’t think are age appropriate. That means getting in trouble for being “ahead of the class” in things like anatomy and sex.

When our time in the pink house came to an end, and my parents went different ways, my brother Joel stepped in and took care of all of us in ways he was too young to do. At night before bed, he would drive my brother, Andrew, and I out to the neighboring town so we could see our mom at her waitressing job and she could kiss us before he took us home and put us to bed.

There are a thousand other memories; feelings, images, familiar smells, favorite foods, least favorite foods that bring back the time we shared under one roof. Good times and bad times. Happy times and hard times. But in the end, there is nothing quite like having an older brother.